Caregivers Support Group
A voluntary caregiver is a spouse, relative, friend or neighbor of a disabled person or child who assists with activities of daily living and assists those unable to fully take care of themselves. The challenges of a caregiver are unique and sometimes it's hard to find people to talk to who know what you're going through. Join the conversation and find others who...
hope everyone had a wonderful xmas. xmas day for me was just a mess. the only good thing is that i am back to work tomorrow. it is so sad that i look forward to work. i have a passion to cook for people. if i couldnt cook anymore i would be lost. however since my wife got sick i have thrown myself into my job even harder. yesterday my sister in law was hosting the annual family xmas dinner. my wife and i actually went which was a miracle. however once there i was insulted because i did not make anything as i usually do to contribute tot he dinner. my wife then proceeded to explain that i am loosing my hands to arthritis and fiibro and alot of days its all i can do to bend my fingers. then my sister in law starts in on me that if i am loosing my hands then how do i expect to b able to continue to help my wife . because she is only going to get more sicker. and that i was a lousy wife and that i should have never gotten together with my wife in the first place if i have health issues of my own. that i was being selfish. so i being very pissed off asked her where she was when her own sister got sick.and how come all the care is up to me when she is family more than me. and yeah it went on and on and this was xmas dinner. but you know it does raise my greatest fear. i am loosing my hands. somedays it is so hard to do the things i need to do. im losing my greatest passion which is to cook and my wife is ill. so what really is going to become of my future?
Please find you a rheumatologist right away and get and stay in therapy. No, it's not going away, but you can live life with it if you start now. There are many things out there, especially trials and sometime that is the key. A friend has had ovarian cancer for 17 years now, just took on another high-paying, high-profile job and moved to another state! She is a PA and is ALWAYS on the look-out for the latest trials. I'm sure that being in the medical profession helps, but if one can get into the "trials" protocol, you may be one of the lucky ducks that the new meds work on, get free monthly supplies (accept that you are a willing guinea pig!), and profit from that willingness. If a med doesn't agree with you, tell them and they will stop. However, you will be in the rotation for the next thing on the market, As for the family crap, just flush it. I have learned how to deal with his family (they are very vocal until a crisis, then it's "We'll abide by YOUR decision, hon." Believe me, they are not lobbying to take over the care of your loved one, only trying to relieve their guilt and anxiety for not being more helpful. Forget them, do what you can, celebrate Christmas at home, and take an equal amount of care of yourself.
Boot
To help though, we recently got her an aide through the state. She is allowed nearly 100 hours per week to help. This has helped a lot as he can take her to appointments now that I cannot put her wheelchair in the car even though it is a light one. He helps clean floors and the kitchen where it is difficult for me and she can't see to clean. He takes her shopping so I don't have to lift anything and bring in the house such as water, milk, soda, all the heavy stuff.
The in-laws have been problematic at times, however now that my spouse is much worse they have no desire to care for her and all of a sudden I'm a godsend. whatever.
I think the future is uncertain for anyone, just a little harder when we have the health problems complicating things even more. Just do what you are doing and forget them. Get some help if you can from the state or an agency. It really has helped us a lot.
Good luck to you Anne, you are not alone.
God Bless